‘I don’t want to die. Living like this is exhausting. It’s taken everything from me.’: Woman with chronic illnesses says ‘I feel incredibly lucky to still be here’

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“Drifting in and out of consciousness, I notice the piercing sirens of the ambulance stop as we arrive outside the resuscitation room. I’ve already had four shots of Adrenaline. It’s not worked. I can’t breathe. I’m being held in a jaw thrust and it’s starting to fail. My wheeze and stridor are deafening. Everything keeps going black. I can’t breathe. My tongue is occluding my airway. My throat is closed. I feel like I’m drowning. The oxygen strapped over my face isn’t doing anything. It can’t reach my lungs. I don’t want to die.

2020 is the year my life got turned upside down. Overnight, my health condition spiraled out of control and threw me into survival mode, fighting for my life and yo-yo-ing in and out of the resuscitation room. I suddenly went from being an active, independent 25-year-old, to a hospital-bound body, being pumped with every medication imaginable to maintain an airway.

Courtesy of Sophie Norsworthy

I have a life-threatening illness called idiopathic anaphylaxis, angioedema, and urticaria. This means my body, for some unknown reason, has anaphylaxis regularly, on occasion up to several times a day. Anaphylaxis is a severe and life-threatening reaction. Symptoms include your airway swelling and closing making it impossible to breathe, your heart rate increasing drastically as your blood pressure drops, developing widespread swelling and hives, and you can lose consciousness. It can develop within seconds and rapidly worsens. Usually, this occurs due to allergens or triggers, which can then be avoided. However, for me it usually happens with no apparent trigger, making it impossible to control.

Living like this is exhausting. I’m exhausted from going in and out of consciousness and hazily hearing the panicked voices of doctors when I don’t respond to treatment. I’m exhausted from having the same conversations on repeat with anesthetists about my risk of death as they assess my airway and set up their equipment… ready for if I don’t respond to Adrenaline when I next relapse. I’m exhausted of countless doctors informing me I almost died and making sure I understand my condition ‘has a high chance of killing me’ if we don’t get it under control.

Courtesy of Sophie Norsworthy

I know. I experience it. Every single time is another trauma ingrained in my brain. I’m exhausted when I finally stabilize and have an airway, knowing I now have to face the debilitating recovery phase. But knowing I won’t recover because I’ll relapse and the cycle will start again. And next time my baseline will be even weaker, making it even harder. I’m exhausted having to fight for my life every single day. I’m exhausted from facing death so often. I’m exhausted living one day to the next and not knowing if I’m going to be alive in the morning. I’m exhausted from feeling so detached from the rest of the world as I’m living in a never-ending nightmare. Except it’s not a nightmare. It’s my reality.

I joke I have a 100% survival rate, but my brain always reminds me…’so far.’

Courtesy of Sophie Norsworthy

My current treatment plan and lifeline is monthly Immunotherapy treatment alongside a strong cocktail of daily medications. I also need to avoid all potential ‘triggers,’ which include exercise, heat, stress, infection, alcohol, and many foods. I could never imagine I’d have to take over 20 pills a day to stay alive. I could never imagine the fragility of knowing if I miss just one pill, it could result in my death.

Courtesy of Sophie Norsworthy

This strong combination of medications enables me to breathe, but they come at a price. They include high dose steroids, which have caused a huge amount of side effects, complications and resulted in me becoming immunocompromised. I have developed Cushing’s syndrome due to high and prolonged steroid use. This has caused blood sugar regulation problems, mobility issues, hair loss, fatigue, insomnia, joint and muscle pain, and cognitive impairment.

Most distressingly, it has also caused me to gain 70 pounds within 3 months, a ‘buffalo hump,’ moon face, purple striae, and development of fat deposits and fluid retention changing my entire body shape. The psychological impact of physical changes from medication side effects are never discussed, but they’re very real and very damaging. I don’t recognize myself when I look in the mirror. There’s a disparity between my appearance and my identity.

Courtesy of Sophie Norsworthy

When I’ve discussed this with clinicians, it’s always dismissed as a minor inconvenience because ‘at least you can breathe,’ or there’s an attempted reassurance of ‘you still look beautiful.’ However well-intended these comments are, they’re irrelevant to me. Whether I still fit into society’s beauty standards despite steroid side effects doesn’t help me recognize myself in the mirror. Who I am and what I see don’t match anymore and the impact is so much deeper than aesthetics.

Since weaning down my steroids, I am now suffering from Adrenal insufficiency. Due to being on such a high dose of steroids for such a prolonged period of time, my own Adrenal glands are now completely suppressed and not producing the hormones my body needs to function. This means I now have another chronic and potentially life-threatening condition. I am completely steroid-dependent and needing yet another emergency injection that can never leave my side in case I suffer an Adrenal Crisis. Alongside this, my illness has also caused a number of chronic health complications: allergic arthritis, allergic migraines, worsening of my asthma, and the constant development of new allergies.

Courtesy of Sophie Norsworthy

Just because living in this see-saw state of survival has become my ‘normal,’ doesn’t mean it is normal or I can ignore the effects it has on my mental health. I’ve developed Post Traumatic Stress Disorder. I have nightmares and panic attacks, constantly reliving the sensation of not being able to move or breathe, with the trauma of anaphylaxis replaying over and over in my mind. Sleep is almost impossible. If I’m awake, I can give myself Adrenaline and call an ambulance. If I’m asleep how can I monitor my airway? When I am able to sleep, I dream of my funeral. It’s terrifying. I don’t want to die. My trauma doesn’t end when I regain my airway. It’s ingrained in my brain. The psychological impact of my physical health never leaves me.

Courtesy of Sophie Norsworthy

However, it isn’t just my health this has impacted. My illness has taken everything away from me. At the beginning of the year, I was living my life to the fullest. I had my dream job. I was always traveling and exploring. I was in the mountains at every opportunity. Nights out, coffee dates, road trips, chasing sunsets, time spent by the ocean. Spontaneity, laughter, joy. It was non-stop and chaotic and I loved it. Now? I’ve been forced to move back into my family home so I can be monitored 24/7 to keep me safe. I can lose my airway and become unconscious within seconds. I can’t work. I’m often bedbound. I have an extremely low level of functionality and my mum has become my career. I’ve gone from cycling 49 miles a week to barely being able to walk 100 feet.

To further worsen my situation, I’ve become sick and immunocompromised in the middle of a global pandemic, which has thrown me into an extremely clinically vulnerable category. This has resulted in me being forced to experience a lot of this journey alone due to COVID restrictions. I’ve spent weeks at a time alone in the hospital with no visitors allowed, and countless blue-light ambulance rides without anyone able to hold my hand.

Courtesy of Sophie Norsworthy

It’s tough. No one can be with you when you come close to death, gasping for breath. No one can comfort you when you receive bad news. No one can support you when you’re making the most difficult decisions of your life. No one can hug you as you begin to process the life-changing trauma. It’s lonely, it’s scary. It’s 24/7 one to one with your mind, facing reality and your deepest thoughts.

I’ve been shielding since the first lockdown. For 9 months, I haven’t had physical contact with anyone except my mum, dad, sister, and medical team when receiving treatment. I haven’t been in a shop, restaurant, or enjoyed a socially distanced drink. I haven’t been able to hug my grandma. I haven’t had the privilege of enjoying relaxed restrictions because the risk is too high for me. I have to remain in lockdown. I haven’t had any sense of ‘normality’ to distract from my medical nightmare for the entire 9 months.

Courtesy of Sophie Norsworthy

My illness has taken my physical health. It’s taken my mental health. It’s taken my freedom and independence. It’s taken my career. It’s taken my identity. I may have an airway but at what cost? A bed-bound body I don’t recognize, unable to function, in constant pain and discomfort, pumped with a multitude of pills to maintain an airway.

However, amongst all the negatives, my illness has given me so much to be thankful for. I have become a lot more grateful for the small things in life, which in turn simplifies it. I get excited about a pretty sky, the sun rays at golden hour, the sound of the rain outside on the ground, or discovering a new song that connects with my soul.

I wish we could all place more importance on the small things amongst the chaos of life because really, they’re the big things. I am truly grateful because of the past year I have fallen in love with being alive. It has taught me the quality of our lives and what we do with them is overwhelmingly more important than how much time we spend on this planet. It’s about what you decide to do with your time. The choices you make. What you stand for. What you fight for. The impact you have. Your happiness. Experiences. Precious memories.

Courtesy of Sophie Norsworthy

Genuine smiles and out of control laughter. Moments of pure joy. Time spent well rather than time just spent. It has allowed me to become kinder to others. We really have no idea what is happening in other people’s lives. Every single person faces their own continual crisis, whatever this may be. But the most important thing I’ve learned this year is to pause, take a deep breath, and remember everything is temporary. Tough times won’t last forever because nothing is permanent.

Last year, I had no idea how it felt to battle with the strength I didn’t know existed to keep breathing and stay alive. I had no idea how it felt to be frantically writing goodbye notes on my phone to my family, desperately trying to articulate how much I loved them as I was losing my airway. I had no insight into how sudden death could be. I had no true idea of how precious life could be. Our lives can suddenly be turned upside down. You can be here one day and gone the next.

Courtesy of Sophie Norsworthy

So, tell people you love them. Resolve the argument. Follow your heart. Chase your dreams and put your middle finger up to societal expectations. Say yes, say no. Don’t settle for mediocre anything. Only chase what sets your soul on fire, surround yourself with your people. Always speak your truth, and above all always be unapologetically you. And do it now. Because this life could be taken away from you as it has almost been taken away from me so many times.

I have no idea what the future holds, but I love life and feel incredibly lucky to still be here, to be able to take deep(ish) breaths and continue fighting!”

Courtesy of Sophie Norsworthy

This story was submitted to Love What Matters by Sophie Norsworthy of Hampshire, UK. You can follow her journey on her Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

Read more stories about chronic illness below:

‘You need to wait it out.’ I thought accepting my illness meant I was giving up. It wasn’t really living. I was simply existing.’: Chronic illness warrior says ‘romanticizing my life set me free’

‘You have a tough road ahead.’ That was an understatement. I had to accept the possibility of dying before I really got to live.’: Chronic illness warrior says ‘I’ve so much to be grateful for’

‘I see you refusing to give up your nights out with friends, your weekend bar visits. I see you, and quite frankly, I’m fed up. My life is on hold.’: Woman with chronic illness says ‘we are vulnerable and we matter’

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